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Challenges Redux …But Also Some Good News

July 6, 2011
Christmas 2004 – not long after Queenie’s diagnosis (ignore the fact that I have 3 chins and that it appears that Santa Claus threw up in our living room) – I would love to see this smile on Queenie’s face again

Queenie’s neuro phoned this evening…MRI is showing lesion growth & advancement which means that her MS is active. Basically, the Cytoxan didn’t slow down or stop the disease progression. He’s talking about some other possible treatments including a larger Cytoxan dose (Queenie has said no to that) and/or plasmaphersis. This one can be a toughie because all of the info I’m finding tells me it doesn’t work for PPMS. Queenie’s also had success with IVIG and we are asking about Low Dose Naltrexone (LDN). LDN and IVIG seem to have the least amount of side effects but LDN is not an approved MS treatment so insurance won’t cover it as far as I’m aware.  Also, it’s not something I think she can take with her pain meds so that might be out right there. What I wouldn’t give for a straight answer !

The answers lead to more questions…..

In the “Good News” Category, I’ve made a wee bit of headway with rehab. I’ve gotten the acute rehab to agree to re-evaluate Queenie for possible re-admission. No guarantees but they’ve agreed to look at her again. I’ve also found a possible sub-acute rehab right in our own backyard , literally. They’re less than 2 miles from the house plus they have experience with rehabbing MS patients (they have 3 MS patients right now, all in Queenie”s age range, too). Hopefully the next few days will bring good news – we could use some right now.


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